Farewell Breast pump.

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DISCLAIMER: This is a bit personal and may be a little TMI for some people.

I have been weaning down my milk supply for over a month, and I think I’m finally done pumping for comfort.  For 21 months I provided human milk for my son each day.  It is the end of an era.  It seems appropriate to take a moment to reflect.

Max received a diet of exclusively human milk (fortified with formula off and on) for nearly his entire first year of life.  To achieve this, I pumped for him 6 to 8 times a day for at least 25 minutes at a time.  That’s a lot of time.  In his second year, Max began receiving a whole foods blenderized diet in addition to a significant amount of human milk.  As the year progressed I began to wean my milk supply.  I heard of crazy hormone shifts and mood swings from other mothers who had weaned suddenly, and I didn’t want to add any more stress to my already stressful life.  So it would be a slow wean.  As an added benefit, I could offer my son a few extra antibodies through the cold and flu season – which would be even more important now that I am working in a hospital and bringing some brand new germs into the house.  I pumped 4 to 5 times a day, then 3 to 4 times a day.  As of April I was actively weaning.  I pumped morning and night for a week. then just morning for another week.  Then one day it was obviously time to quit.

After pumping for my usual half hour, one of my nipples was killing me!  I examined it and I noticed two good sized cracks or broken skin on the outer edge of the nipple.  Eeek! No wonder it hurt so bad.  I wondered how I could pump even once a day with this “injury”.   As I expressed my concerns to my husband, the voice of reason said: “Stop!  This is your body telling you it’s time to stop!”  This coming from a man who has always been in great support of breastfeeding, I knew I had to listen to him.  He was right.

Those first couple of week felt weird.  I’d be doing something in the middle of the day, stop suddenly and gasp.  In a split second I would think:  OMG, I need to pump!  When did I last pump?!  Then in the next split second I would think Oh right, I don’t have to do that anymore.  And when I got engorged five days after later I thought I had mastitis, cancer, a tumor…I hadn’t felt engorged in over a year- I couldn’t remember what it felt like!

At any rate, this era of my life that has come to a close.  When I think about all that time I must have spent pumping, I can’t believe I made it all work.  When did I find time to wash all those bottles and pump parts?  I remember several occasions on which I was just getting ready to head out the door to run an errand or do something fun, when I realized that I had forgotten to pump.  For quick errands I could get away with it, but on other occasions I had to drop everything and do at least a quick pump before I left.

It was tough, being a “slave to the pump”, as they say.  Exclusive pumping is much more difficult than breastfeeding (not that I’m an expert, as I have never breastfed).  It is a route for only the most stubborn and determined mothers.  And no woman need feel like less of a mother because exclusive pumping didn’t work for her.  I would never recommend it to anyone, and I know other mothers in my shoes who feel the same way.  I’m glad I did it, I’m glad it worked out for me and my family, I’m glad I was able to give Max the best nature can offer, but I wouldn’t wish it on anyone else.  I’m happily saying farewell to my breast pump and welcoming the new found freedom.  Now I only have to schedule my life around Max, one factor is taken out of the equation.

Real food for Tubies!

Our Blendtec blender arrived in the mail last week.  We are ready to begin Max’s blenderized diet!

When Max received his g-tube, I assumed I would pump for as long as I could stand it (my initial goal was 9 months – HA!) and then we would have to move him to Pediasure or another chemically derived liquid formula.  I just assumed that the only way to get food and nutrients through the tube was to feed him exclusively on an unnatural liquid diet.  I first heard about the blenderized diet from a friend who had a child with a g-tube.  She put me in touch with the Facebook group for parents of kids on the Blenderized Diet.  Since then, I have been observing, gleaning, and learning a ton!  The parents in this group had so many great things to say about blending real foods for their tube fed children!  Kids who had trouble gaining weight were back on the  growth charts.  Children who would vomit after almost every formula feeding would quit vomiting altogether.  There were parents of kids with g-tubes, j-tubes, peg-tubes, and even NG tubes!  There were even adult “tubies” in the group.  I was sold!  I knew that real food was what I wanted for Max.

We started small.  We got some jarred baby foods and added some to a couple of his feedings per day.  I was beginning to need to supplement his expressed breast milk with some formula (yes, I’m STILL pumping), so we tried to substitute the formula with baby food.  He started having less problems with gas and was more content to be laying down by himself.  As we increased the baby food that we were giving him and decreased the formula, Max started stooling much more consistently.  I tried a few other foods – homemade pureed beets, blended avocado, and garbanzo beans.  The beets and avocado worked fine (other than having some beet-stained diapers), but the garbanzo beans wouldn’t go through the tube.  So the next step was to get a professional blender.

According to the moms on the blenderized diet (BD) group on facebook, there were two options:  Blendtec or Vita-Mix.  These are the only two blenders that can blend pretty much any food fine enough to go through a tube.  So I contacted the companies to see if there were medical discounts available, and about a week ago our Blendtec showed up!  Surprisingly enough, I have not used the blender yet.  It’s just sitting on the counter looking great, building my excitement.  I think eggs will be the first thing to try.  I plan to blend all the food he would take for couple days at a time and then give him a balanced “meal” at every feeding rather than trying to balance his diet with one food at each feeding.

So we’re just starting.  I have no great recipes or advice to offer (keep checking back, I will post recipes when I get good at this), but I’m excited.  I think this is going to be great for our family and especially our son!

My issue with Dietitians

I met with a dietitian via Skype a couple weeks ago.  And ever since that visit I’m beginning to realize that I have some issue with dietitians.  An underlying distrust or skepticism…I can’t quite put my finger on it.

The History

When Max was about 3 to 4 months old, he started having these retching fits during or after his feedings.  When his tube was installed they also did a surgery called a fundoplication that would keep him from refluxing – as a side effect he wouldn’t be able to burp or vomit until he was older.  So when we saw these retching fits we assumed he was trying to vomit and we helped him to get the food out of his stomach via a “decompression tube” (basically burping him through his g-tube).  So I decided I would like to meet with a dietitian to find out what was causing this urge to vomit.  About two months later when we finally got the appointment set up, we had discovered that Max’s stomach wasn’t moving things through – it was emptying very slowly.  His doctor put him on an stomach/appetite stimulant.  It took a long time to get the dose adjusted to one that worked for him and allowed him to gain weight.  While we were in this adjustment period we met the dietitian.  She was wildly unhelpful.

She plugged his weight into her chart and told me that he was in the 15th percentile and that was dangerously close to being diagnosed failure to thrive.  She told me I needed to get up in the middle of the night (every three hours) and pump if I wanted to keep my milk supply up.  I needed to increase my calories and drink more water in order to make more milk.  All of which I knew.  I’d read three whole books on breastfeeding (one of which was wholly devoted to how to make more milk) for goodness sake!  And she said I needed to consider fortifying Max’s breastmilk with formula in order to get him enough calories to keep him from dipping any further down on the charts.  At the close of the meeting I felt confused and frustrated.  I was doing everything I could to keep my milk supply up, including taking herbs suggested by my midwife (which the dietitian hadn’t even touched on).  The problem was I wasn’t getting enough sleep.  The stress hormone cortisol was running rampant in my body and hindering my milk production.  But even that was beside the point.  Max couldn’t keep down everything I was already feeding him.  How could I possibly feed him an entire ounce more at each feeding?

I talked to the doctors and they were not at all concerned about his weight.  It’s better for him to be small they said as it will be easier for him to move around.  Gaining a lot of weight will only further hinder his motor development.  I felt vindicated and wrote this dietitian off as an “expert” who didn’t understand any child who didn’t fit into her box or her computer program.  And I didn’t initiate any contact for a long time.

Another Visit

Recently I have been researching blenderized diets.  I started by adding baby food to breastmilk to thin it down enough to get it through the tube.  A pretty easy thing to start with while I did more research and got the equipment I needed to go at it full force.  I thought I needed to talk with a dietitian again to see what caloric and protein needs Max had for his age and activity level.  I felt terrible because I know I was short and secretive through the entire meeting, and I didn’t really understand why.  It was a new dietitian, she hadn’t done anything to me.  What was my problem?

Well, she plugged in her numbers and came up with a daily caloric need of 785 for Max with a protein need of 12 grams.  Then she plugged in some more numbers and determined that right now Max is only getting between 595 and 645 calories and only 6 grams of protein per day.  She suggested since he isn’t very active to try to get him between 700 and 750 calories per day.

So I set off to my research.  I figured that if I tried to get him his protein needs that the calories would come since protein is pretty calorie dense.  I had heard about Spirulina being a good plant-based protein source, but I wasn’t really sure what it was.  I discovered it’s a seaweed and the only complete protein that is plant-based.  I also found that I could get it in powdered form which would be easy to give via tube.  I didn’t have a fancy blender that could blend up anything yet, so I was pretty limited in what I could give Max as a protein source, so I figured this was a good option.

A week later we met with Max’s Gastrointestinal Doctor.  After a week of giving Max 1-2 teaspoons of spirulina per day, he was at the 59th percentile and heading straight off the growth chart!  Now I don’t know if the spirulina is just that good, or if the extra calories were just that much more than he needed, but WOW!  I told the doctor about the dietitian recommending even more calories than I was giving Max and he just said, “well, that’s what the numbers say, he’s not going to fit what the numbers say.”  (Did I mention I love our GI doc?)

My Issues

My initial distrust of the dietitian was unfair.  I should have been more open when meeting with a new dietitian, but I had been burned.  And it turns out I was right to distrust – I got burned again.  It’s frustrating to me because the dietitians that I have worked with specifically work with kids with special needs.  They should understand that not every kid has the same needs – that each special case requires a special plan of care.  It’s not good for any child to go skyrocketing off the growth curve.  Maybe it’s because these dietitians are part-time/work from home types and they don’t have the time to really get to know a child’s case and give relevant recommendations.  But I know it’s going to be a while before I contact a dietitian again.  To be frank, I just don’t trust that they would take the time to get to know our case if they did have the time.  I’m a busy mom and I have better things to do than to listen to irrelevant recommendations for my child based on averages.  My son is not average in any way, and he never will be.  Someday I may try working with a dietitian or nutritionist again and at that point I will do my best to do so with an open-mind, but for now I need a break from people who try to put my son in a box – who think they know him based on his labels.  Labels are too easy.

My Morning as a Model

As I mentioned last week, I was honored to be involved in a photo shoot for my local breastfeeding coalition.  It was so much fun!  As you can see, Max pulled out his adorable tears for the occasion, so we got a lot of fun comforting shots.  My husband went along mostly just to watch the shoot, but I was really glad that they included him in some of the photos.  His support is a big reason that I’m still able to pump for Max, and he deserves some credit for that.

Looking over the photos this week (and seeing some of the other photos of moms from the shoot) got me thinking a lot about why I do what I do.  Why I keep on pumping even though my son will never be able to suckle at the breast.  The biggest reason I do it is because I know that it is the best possible nourishment for him.  Over and over I hear doctors and therapists say, “if he gets sick, it’s going to hit him harder than other kids” or “it’s just going to take him longer to get over colds and things.”  But really, he has done very well.  He is at risk for aspiration, and repeatedly gets a strider in his throat after coughing, but he has never had pneumonia.  He has gotten a few colds this winter (all kids do), but they weren’t bad and he recovered well.  Is it because of the extra antibodies that he gets from his milk?  I don’t know, but I gaurentee it doesn’t hurt.  I don’t want him to be prescribed antibiotics over and over because I want him to build his immune system.  I don’t want to be building antibiotic resistant strains of bacteria.

The next biggest reason I keep at it, I think, is because I don’t think of it as the huge inconvenience that so many people seem to think of it as.  I am an introvert who craves her alone time.  In my hectic life of doctors and therapists, tube feedings and medicine times, pumping gives me a perfect opportunity to pause, pull out a book, check my e-mail, or just think.  I don’t sigh and whine about how much I hate pumping or think about all the other things I could be doing.  I just do it.  When I was first pumping in the NICU after Max was born, I thought three months seemed like an eternity to pump for.  But as my husband predicted, I just got used to it.  For the first few months I kept at it because I really believed that he would heal to be able to breastfeed when he was a bit older.  As I slowly realized how unlikely that was, I had already developed a habit.  Sure I complain about it every now and then.  It’s not like I love to do it all the time.  But it’s a part of my life now, and it’s going to be weird to stop.

The final reason I’ve kept up pumping for nine months is because I always believed breastfeeding was worth fighting for.  I don’t mean to sound to judgmental here (although I know I will sound somewhat judgmental), but even before my son was born I knew that I would work as hard as necessary to make breastfeeding work for us.  I keep hearing about moms who say that breastfeeding just didn’t work for them, or they intended to breastfeed but this or that happened.  And I can’t help but wonder, how hard did you try?  If your milk is slow to come in, what’s wrong with formula feeding while you pump to encourage milk development?  Did you call a lactation consultant or a La Leche League leader?  We don’t live in the village culture anymore, so we don’t have mom and grandma there to teach you how to nurse  your children.  It doesn’t come naturally anymore.  We’ve socialized it out of our culture.  And if you want to make it work, you need to have support.

I was really exited to be a part of this photo shoot because I wanted to help the world to see that breastfeeding is worth working for.  I’m sure many mothers would quit pumping if their child had a permanent gastronomy tube placed.  And I think doctors expect them to.  I feel like an alien sometimes when I tell Max’s doctors that he is receiving x mL’s of expressed breastmilk fortified with x amount of formula.  For nine months not one of them has asked me how it’s going or how long I’m planning on continuing, or has really talked to me about it at all.  I figure if anyone really needs that real, natural nutrition its my son.  It’s those kids who probably aren’t able to breastfeed for some reason.  Babies with kidney failure, those undergoing cancer treatments and babies with genetic syndromes requiring tube feedings.  I want mothers to see that it can be done.  I want them to be supported.  I am a part of a great Natural Parenting of the Child with Special Needs group on Facebook.  They put me in touch with an Exclusive Pumping yahoo group geared towards moms who aren’t able to breastfeed for various reasons.  The women in these groups have been an amazing source of support for me.

I understand that breastfeeding is a highly personal issue because it involves the mother’s own body.  Women don’t want to feel pressured to breastfeed or pump because they associate it with their freedom and flexibility.  But that is ignoring all the benefits.   The amazing feeling you get when you give your child a part of your own body.  In special needs cases, the ability to do something for your child.  Your milk is so nourishing for them.  I think that pumping for my son has made me feel much more ownership of his care.  He is my son, and I know what he needs:  mama milk.

Without trying to sound too judgmental, I beg you, for your child’s sake, please work to make breastfeeding work for you.  Seek out your local La Leche League for support.  If you are breastfeeding and aren’t able to relax and enjoy it please get some support.  Don’t just do it out of guilt or drudgery.  It can be an amazing experience for both of you.  My dream is for every mother and baby to have an enjoyable breastfeeding experience.

That’s my soapbox, I’m getting down now.  I just wanted to get the word out that it is possible.  My family has a history of low milk supply, yet my son has  some great chubb.  It took work, but it’s possible.

Breastfeeding and Tube feeding

This morning Max and I posed for a photo shoot for the local chapter of the breastfeeding coalition.  Hooked Max up to his pump and me up to my pump and photographed the whole process.  I was so excited to be a part of this.  I really wanted to raise awareness of tube fed babies and also to encourage mom’s who are tube feeding to keep pumping.  Breastmilk is hands-down the best food you can give your baby and it’s worth working for.  We all make sacrifices for our children, this is probably one of the most noble.  Having a tube fed baby doesn’t mean you have to formula feed.  I’ll post some pictures when I can get my hands on them!